“I came very close to not releasing this post, due to its inherent personal and humiliating nature. But at the last minute, I put my big girl panties on and decided just maybe someone could relate and perhaps even empathize.”

This past week we noticed a sudden decline in my health. The things that I had been able to do for a while, I could no longer do! Plus, you remember that entire post about me transiently losing the use of my legs? Well it is still happening. At times I’ve been extremely fatigued while other times I am as normal as I can be.

Now I know what was causing such a dramatic change in my condition. Have you heard of urinary tract infections (UTI) or bladder infections? I don’t tend to experience the typical symptoms of a UTI, instead my MS symptoms just get worse. This means I get extremely fatigued and have more trouble ambulating. The bad part is I know how UTIs affect me, but I totally dropped the ball on this one! I failed to see it coming, even though I was having to use the bathroom four times an hour! Guys, I can barely walk so making it to the bathroom in a timely fashion sometimes just isn’t possible! There were accidents to say the least. I mean embarrassing life changing accidents, as I perceived it.

The one that finally sent me to the doctor occurred at my mother-in-law’s house!!!!! I was mortified! Someone was in the bathroom so I ended up letting lose in my sister-in-law room!! AGHHHHHHHH!

How did I get there? Well, originally I thought I could hold it until the bathroom was free. If I had known Tommy was the one in the bathroom I would have banged on the bathroom door like a mad woman. As it was I didn’t want to make a scene. Ha! So I came up with the bright idea to look for a towel that could possibly intercept the impending flood. I frantically side stepped into his sister’s room. I was cupping myself like I could catch the urine as it flowed like a river out of me! Standing there gripping the wall for balance while holding myself I thought I was going to die of pure shame!

I finally yelled for Tommy. Both him and his sister came running in the room. They both started cleaning up the foul smelling urine.

“I’m so sorry.” I whispered to his sister.
“I’m so sorry.” I managed between sobs.

She smiled and said, “Nicole, I have a 3 year old. This is nothing.” I was immediately relieved but somberly guarded and replied with a half hearted smile. After Tommy had completely fumigated the bedroom and bathroom, he asked me if I wanted to go to the store. I said, “Sure I need to pick up a case of Depends!”

Later when we returned I called my doctor. My mood was slightly lifted as I now had protection and was headed in the right direction. His sister knocked on the door, peeped in again and reassured me everything was okay.

I naively like to think that my mother-in-law didn’t have a clue of what had just taken place!

Pooping and Peeing with MS
Wow, we just had another really close call. I have pooped my pants several times, unable to avoid it. I often carry a change of black pants, underwear, pads and baby wipes to clean up, and always a toilet paper and extra plastic bags.
I am going to recount a few of my personal experiences, so those of you with MS do not feel alone with challenge of pooping and peeing discretely and as needed. The latest one has happened right now. We were sitting in my truck, four doors, in front of the gymnasium waiting for the governor to come and to speak. Of course, we parked on the far side in a shade of trees, so I could open the door and get out and pee, when needed. Always park so that whatever you are sitting, drivers side or passenger, you can get out, best to sit in the front seat always, to pee in your cup – I will explain later, and put it on the ground or in a pee pot, for an example plastic mayonnaise jar with the screw on top that goes everywhere with you in your bag, as well as baby wipes, an extra pad, a little bottle of alcohol gel to clean your hands and whatever else. I always travel in my personal truck, 4 door, 4 wheel drive that has a running side step that can be sat on, stretch pants pulled down, ready to blast! Such is the case of what just has happened to us. I decided to write this now, so I can give it to whatever assistant I can have, so they are not shocked when I scream “Pull over, fast!” many of us with MS do not have a lot of control of our peeing or pooping. More often than not we are constipated. In my case it’s only a short moment or two when my body is saying “Ginny, you’re going to pee now, get ready!”
Let me explain to you what I wear every day and have for the last 5 years: black stretched yoga pants, Stonewear Design. I am a small size, but they come small, medium and large. Nothing compared to the silk, tweed, blue jeans, gaucho bombachas, skirts, but I least I can pee and poop wherever I can and avoid the embarrassment most of the time. Please see photos of getting up from sitting on the ground, prior to breaking my back, and having to do a downward dog first of all to get up, bringing my cup out of my bag, peeing in it, taking away my hands and dance a bit, as the pot is held by my semi tight stretch pants. When done peeing I turn so no one watch it, and toss it, in this case, on mate hill. I understand that I had the option of doing a leg bag, with a catheter in my vagina, which I personally could not insert myself, because my hands don’t function that well. And I am sure there are new ways now that I will investigate at some point. I have looked into the drugs that are making you so dry, just like marijuana that gives you cotton mouth. It is just not natural. I have never liked drugs and avoided them as much as possible, but then I live in the country. If I want to go to the opera or a play, I simply drink nothing three hours before I go, to make sure my bladder is empty. If I go on a date with men or women friends, which is rare these days, I explain the situation ahead of time, we have a good laugh, and either they accept me, or they don’t. If they do not, they are not my real friends anyway. I am long passed having to please others and very long passed worrying about being embarrassed. For the sake of my companions I am as discreet as possible, so as not to embarrass them.
I have peed on city streets, on the other side of a car while my friend was talking to the police, in elevators, at parties, and no one even suspected. Who would ever think a woman like myself would be doing such a thing? It just never crosses their mind that I could be doing what I am doing, unless they have known me for a while, and then we just laugh.
I had no problem with my peeing for many years; it had only started six to seven years ago, I have not been able to have total control of my urine. I was tested last year when I broke my back. Normal capacity of a bladder is, I believe 200 milliliters, and mine is just 60.
I am pleased to say that I have graduated since November 2009 (I broke my back in May 2009) from major diapers, and my rigid corset that I named Madonna (please see photographs) – and that’s another story regarding helping people with broken backs, especially those with diseases such as MS. There are at least 500 000 people with MS just alone in the USA, only 7000 here in Argentina. I hope this would reach not only people with MS, but also people that help them, live with them and love them. Yes, you can have sex with the broken back and with MS, even within 6 months of breaking your back. I had a young beautiful woman from Australia as my assistant, coming out of the rehabilitation center and going on to do the art show that was a commitment I had made the prior year, when I was still walking with Nordic walking ski canes, very light weight, titanium. Mia and I were figuring out what positions were safe as I had a man friend that was coming within a week and he was writing very sensual poems to me.
It is no longer possible to walk alone with just canes as my balance has worsened and I only feel safe with a walker or using my wheelchair like a wheelbarrow with my things in it, my sketchbooks and everything, and sitting in it when I get tired of walking. There are several excellent walkers on the market now that roll; they have baskets, a chair to sit on, giving one a lot of security. I brought it from the USA in 2005, I am sure there are better things on the market by now. One of my favorite ways of getting around by myself prior to coming to Argentina was my covered golf cart that had 4 seats and a storage back where normally the golf clubs go. it was battery powered. It could also have been solar powered. I lived in the ideal country town, organic food type, Paonia, Colorado, where I had a lovely home and guest house/studio, horses, golden retriever and it was just above the old river road trading post/organic vegetarian restaurant and food store. It is also the farm that Sky taught horsemanship and went to school for a year. It is where we moved to after 9/11.
When I was in the rehabilitation center there were long hallways; it was a big, beautiful building and I had several friends on the different floors. The friend that flew me from Patagonia to the hospital with his pilot in private plane loaned me the electric wheelchair of his now deceased mother. She had lived with polio since she was 30. She just died in the last few years. Visiting my friend in the hospital driving my powerful electric wheelchair had been great fun, because with my broken back I certainly didn’t walk very well and it enabled me to visit many people and spread good cheer and love. I was on a mission. Excuse me, we’re going to break here cause I am crying.

I too have ZERO bladder/bowel control. Tena Overnight pads help me more than depends because I have leaked OUT of depends! :/ Gross, I know. Can’t sleep in skimpy little pj’s next to my hubby anymore because the Tena pads require FULL ON COVERAGE because you dont want the pad adhesive to “catch hair”, Gross TMI, I know. I feel like with bladder/bowel issues I’m not me? I don’t really even know who “ME” is anymore? I’m 36 years old, have 3 kids, a 13 yr old daughter, an 11 yr old son, and a 5 yr old daughter. I get so aggravated because my son wants to play baseball, but I can’t be outside for more than 10 minutes at a time, and most bathrooms for baseball fields are quite a walk aways! My hubby is so wonderful and tries to limit my daily activities but if I don’t I’m scared I will regret it if I come to a time when I can’t? UGH, stupid disease! >:/

Hello Sharon, This is Ginny from Patagonia. I am not sure where you got my name to respond, but I assume the New Normals Blog and I am glad that you got me back in touch. I will be checking the blog more often now. I have been with another MS attack and had to relocate for 6 months to San Martin del os Andes. Having MS for 36 years I can tell you what I would do in your situation regarding the baseball outings or any outing for that matter. I continue to go out even when I am tired in my wheelchair. Here is my Peeing technique. I have a nice white plastic cup that fits into my purse, and then if I do not have a bathroom close by to throw the pee, I deposit the pee in my cup into a larger mayonnaise jar until I can dispose of it. The jar can only hold a couple of pees though. If I am outside I can discreetly put in in the grass or the gutter. When the jar is filled, I have to find a bathroom to empty it.

I always wear black yoga stretch pants from Stonewear Designs. They stretch enough to put the cup inside my pants and pad as well. I stand up from my wheelchair while my assistant sheilds me if we are in public. With these pants, I can be so discrete and can even dance a bit and take a few steps and the pants hold the cup in place. When the coast is clear, I discard it. Obviously, I can carry on a conversation and have even with a policeman on the other side. I can even talk while I am peeing and my hands are out of my pants because the pants hold the cup in place. One of the funniest time was when my friend was pulled over by the police and I had to pee. I got out of the other side of the care and did my little trick with my pants and cup. He had no idea. It is just so discrete. I do the same thing in a movie theater or wherever. I have never been caught and I always say that no one would believe that a crippled lady would do such a thing, so I really do not want to worry about it. I just want to go on with my life and I laugh about it. I will say, pooing ones pants is not as easy. I always carry another pair of pants, God forbid that ever happen. I am going to try and attach something I wrote, a journal entry, that my be in the book that I am writing.

Pooping and Peeing with MS
by Virginia Neary Carrithers

¨Wow, we just had another really close call. I have pooped my pants several times, unable to avoid it. I often carry a change of black pants, underwear, pads and baby wipes to clean up, and always a toilet paper and extra plastic bags.
I am going to recount a few of my personal experiences, so those of you with MS do not feel alone with challenge of pooping and peeing discretely and as needed. The latest one has happened right now. We were sitting in my truck, four doors, in front of the gymnasium waiting for the governor to come and to speak. Of course, we parked on the far side in a shade of trees, so I could open the door and get out and pee, when needed. Always park so that whatever you are sitting, drivers side or passenger, you can get out, best to sit in the front seat always, to pee in your cup – I will explain later, and put it on the ground or in a pee pot, for an example plastic mayonnaise jar with the screw on top that goes everywhere with you in your bag, as well as baby wipes, an extra pad, a little bottle of alcohol gel to clean your hands and whatever else. I always travel in my personal truck, 4 door, 4 wheel drive that has a running side step that can be sat on, stretch pants pulled down, ready to blast! Such is the case of what just has happened to us. I decided to write this now, so I can give it to whatever assistant I can have, so they are not shocked when I scream “Pull over, fast!” many of us with MS do not have a lot of control of our peeing or pooping. More often than not we are constipated. In my case it’s only a short moment or two when my body is saying “Ginny, you’re going to pee now, get ready!”
Let me explain to you what I wear every day and have for the last 5 years: black stretched yoga pants, Stonewear Design. I am a small size, but they come small, medium and large. Nothing compared to the silk, tweed, blue jeans, gaucho bombachas, skirts, but I least I can pee and poop wherever I can and avoid the embarrassment most of the time. Please see photos of getting up from sitting on the ground, prior to breaking my back, and having to do a downward dog first of all to get up, bringing my cup out of my bag, peeing in it, taking away my hands and dance a bit, as the pot is held by my semi tight stretch pants. When done peeing I turn so no one watch it, and toss it, in this case, on mate hill. I understand that I had the option of doing a leg bag, with a catheter in my vagina, which I personally could not insert myself, because my hands don’t function that well. And I am sure there are new ways now that I will investigate at some point. I have looked into the drugs that are making you so dry, just like marihuana that gives you cotton mouth. It is just not natural. I have never liked drugs and avoided them as much as possible, but then I live in the country. If I want to go to the opera or a play, I simply drink nothing three hours before I go, to make sure my bladder is empty. If I go on a date with men or women friends, which is rare these days, I explain the situation ahead of time, we have a good laugh, and either they accept me, or they don’t. If they do not, they are not my real friends anyway. I am long passed having to please others and very long passed worrying about being embarrassed. For the sake of my companions I am as discreet as possible, so as not to embarrass them.
I have peed on city streets, on the other side of a car while my friend was talking to the police, in elevators, at parties, and no one even suspected. Who would ever think a woman like myself would be doing such a thing? It just never crosses their mind that I could be doing what I am doing, unless they have known me for a while, and then we just laugh.
I had no problem with my peeing for many years; it had only started six to seven years ago, I not been able to have a total control of my urine. I was tested last year when I broke my back. Normal capacity of a bladder is, I believe 200 milliliters, and mine is just 60.
I am pleased to say that I have graduated since November 2009 (I broke my back in May 2009) from major diapers, and my rigid corset that I named Madonna (please see photographs) – and that’s another story regarding helping people with broken backs, especially those with diseases such as MS. There are at least 500 000 people with MS just alone in the USA, only 7000 here in Argentina. I hope this would reach not only people with MS, but also people that help them, live with them and love them. Yes, you can have sex with the broken back and with MS, even within 6 months of breaking your back. I had a young beautiful woman from Australia as my assistant, coming out of rehabilitation center and going on to do the art show that was a commitment I had made the prior year, when I was still waking with Nordic walking ski canes, very light weight, titanium. Mia and I were figuring out what positions were safe as I had a man friend that was coming within a week and he was writing very sensual poems to me. It is no longer possible as my balance has worsened and I only feel safe with a walker or using my wheelchair like a wheelbarrow with my things in it, my sketchbooks and everything, and sitting in it when I get tired of walking. There are several excellent walkers on the market now that roll; they have baskets, a chair to sit on, giving one a lot of security. I brought it from the USA 5 years ago, I am sure there are better things on the market by now. One of my favorite ways of getting around by myself prior to coming to Argentina was my covered golf cart that had 4 seats and a storage back where normally the golf clubs go. it was battery powered. It could also have been solar powered. I lived in the ideal country town, organic food type, Peonia, Colorado, where I had a lovely home and guest house/studio, horses, golden retriever and it was just above the old river road trading post/organic vegetarian restaurant and food store. It is also the farm that Sky taught the horsemanship and went to school at for a year. It is where we moved to after 9/11.
When I was in the rehabilitation center there were long hallways; it was a big, beautiful building and I had several friends on the different floors. The friend that flew me from Patagonia to the hospital with his pilot in private plane loaned me wheelchair of his mother. She had lived with polio since she was 30. She just died in the last few years. Visiting my friend in the hospital driving my powerful electric wheelchair had been great fun, because with my broken back I certainly didn’t walk very well enabled me to visit many people and spread good cheer and love. I was on a mission. Excuse me, we’re going to break here cause I am crying.¨

Hi Nicole,
I had to respond. This is “SO” been there, done that, for me. On top of having an MS Bladder, I also have OLD NURSE BLADDER SYNDROME ! (Nurses are notorious for “holding it” until they just can’t any longer, consequently, we lose all the elasticity in our bladder ANYWAY) ! Then I find out I have MS, so…well, you can guess the rest ! I can’t count how many times, I’ve found myself in a situation, where, nature called at the most IN opportune time ! I finally relented to wearing protection a few years ago, which really chapped my *&# (no pun intended) since, wouldn’t you know….just when I have a hysterectomy, and think I am done with THAT fun ride…here THIS comes…
Now, a funny (because we can all use a good laugh, once in a while) Shortly after I relented and started wearing protection…you know…the SUPER SIZED pads…I was out at a very classy, up-scale restaurant with some friends, when I had an “Uh-Oh” moment, excused myself, and (with as much dignity as I could muster) hurried to the bathroom. Once I got behind closed doors, I immediately started to slide down my pants, and get into position, when I felt a “ripping” sensation, and experienced the most excruciating pain I think I have EVER experienced… The pad had slipped and somehow adhered itself to me !
You get the idea…right ?
Well, YES….I screamed out in PAIN, and YES, they heard me from the dining room…
and, YES, I lied….I hated doing it, but I didn’t think Chuck (the owner, who came running up to me the second I came out of the bathroom) would mind spraying his place for bugs…WELL !!! I had to tell him “something” !!!!

Years ago, I think it was an issue of People magazine, there was a cover story of a women with MS. The main issue of the article was about how this women wanted to take her own life, because of her symptoms of MS. This was back in the day when Dr. Kovorkian was a popular issues for debate. The article was almost agreeing with this women’s plight with MS and her right to end her own life. I remember her saying her life was “useless” because she did not have bladder and bowel control. I also remember thinking to myself…if that ever happened to me…I would do “IT”. Well, guess what? Here I am, publically peeing and pooping on myself, diagnosed with MS in 2000.

The awful reality and embarassment of these systems of MS has brought me to my knees, but has not broken me! Nor, is taking me own life even a thought! Here is to ALL OF US, who continue to live life, experiencing all the lessons…all the growth…all the strength that MS brings us!!!!

I am in your club my dear. My name is Faye. I’ve been in both situations. Once I couldn’t get to the bathroom soon enough, I was driving and peed myself in the car. The same thing happened with my bowels, in the car. So I must say the car has been christianed, but not with champagne!

It’s a tough road. Yes sometimes I do consider suicide when/if things get really bad. But what’s the definition of “really bad.” I read the book “Tuesdays with Maurie” and he stated he thought the worst would be when someone would have to wipe his ass, yet it happened and he kept going.

But as I pass each stage of this illness, I seem to be able to handle it all and scream NEXT!

Thank you for sharing this. I pee in a cup that I carry in my bag! And when in public, I carry a MAYONNAISE JAR in my bag in a plastic bag and throw it when I can.

I am in a wheelchair now so I can’t get to a bathroom hardly ever. Luckily I live in the country and it’s easy to just dump it outside in the warm months.

I have written lots of essays on this problem and a 100,000 word timeline on my life that I have been asked to write but I doubt I will have it published. I just don’t have the energy to follow through.

Someone else is typing this for me as my eyes are not good. I have been blind in one of them and my right hand doesn’t work well. Enough said, check out my website and do you know where I could post some of my essays I have written on bowels and bladder, called “Pooping and peeing with MS”… even astride a horse!

Oh dear…thanks everyone for sharing! A few months ago I had my first experience in public as I let it fly in the middle of Home Depot (as I was running around frantically looking for the bathroom, which is NOT in the back of the store)….in retrospect it was kind of funny, but certainly not at the time. Thank GOD for long jackets…I made it out to our van and then called my husband who was in the store looking for me….and OH what a lovely feeling to sit in wet pants….ugh…..no wonder babies scream when they have a wet diaper…..so now I wear a hideous pad when when I go out in public, just in case…ugh….ms sure does suck….grrr xoxox

i came across your page and was glad to see it was just not me. i have had this going on alot this past year. luckly my wife is a nurse and understands. i have been able to figure out problem areas like wal-mart lol my wife says it seems like those words makes my problem get worse. lol my sister got ms 3yrs before me it helps us to joke about it to get by. i am glad for pages like this it helps us not to feel alone.

Curtis, LOL Sounds like
you have a great support system. A crucial part of copin. I got to know, how did you find the site? I’m glad you did and please keep coming back! I release new stories on Tuesdays.
Thanks for reading!

Hi Michelle, Thank you for sharing. It had to be difficult to do. Its much appreciated by many. I’m going through the same bladder issues. Timing is everything, isn’t it!?! Sorry to hear of your worsening symptoms. Hope they resolve along with the UTI. And I will be calling my Urologist tomorrow! Take Care Michelle.

i have had bad experiences myself, the worse being at my sisters house for christmas with family and i laughed while sitting at thw table and all of niagra falls came to dinner!!!i was horrified,, a few of my family members saw whay was happening and said nothing so i jusy got up went got the mop and started cleaning up where i had wet the floor. most of the family thought i had spilt something, my sister was okay with me but i was so embarassed, i had to stay in my pissy clothes(jeans)for the rest of the evening, to leave would have caused greater attention to myself then staying did. my reality now is that at 51 i have to wear teemas or a full diaper if i really dont feel good when i go out, that is my reality right now. peeing the bed is no biggie to me now, my husband has been reduced to washing the bed clothes 2 or 3 times a week behind me, and i usually have to wash my clothes out 3or 4 times a week myself, thank God i have a washing machine and a family whop understands…maybe they dont undersyand but they deal with it really well. thank you for this place to vent and sat these things i would not be able to say anywhere else

Gail, Sounds like you managed to make it out of there alive! The worst part for me would have been staying in those clothes. That had to have been rough!
But, you did it! I’m glad you found the site. I release new stories on Tuesdays!

Nicole, thank you for sharing about your experience with this unfortunate issue many of us deal with. I have problems with frequent UTI’s. Also with MS and RA, and the days when I can’t walk fast or feel my legs, it seems almost impossible to make it on time. Sometimes it’s difficult to feel the urgency to go. I’m sorry we have to suffer this too:(

Vicki,
I’m curious about the symptoms of your RA. I’m not sure I have it, but from what I’ve been reading it might be. I have MS and been dealing with bladder incontinence and inability to empty completely for over a year now. I’ve had many ‘accidents’. The past 4-5 days I’ve been waking up with an excruciating headache pain and pressure. Caffeine, food, and tylenol haven’t helped. Primary dr says it’s not anything sinus. In addition, my vision’s been blurry and ‘skipping-for lack of a better term’ and my eyeballs are heavy and hurt my fingers, feet and ankles are swollen (edema) and stiff. So, off I go to the neuro tomorrow. Not sure it’s an MS relapse or exaccerbation or something new and related to this JC Virus antibody I tested positive for? Who knows anymore….So, I’m curious about the RA. Please say prayers for me, since I’m a firm believer it’s pretty much the best solution!! Thank you. Lisa

Thanks for sharing. But you are not alone, after many, many, nights, of waking up wet. I finally broke down and bought me some depends. Now I sleep in them, have too. I was embarresed, but now I’m not. We do what we have to do.

“We do what we have to do.” So true. We do what we have to do just like someone who loses vision or is born without an arm. We adapt as needed to continue forward with life. These stories are true realities and not something to be ashamed of in any way. Surely, every time we think we have experienced the worse, there is someone else with an even more mortifying tale.

Thanks for sharing and reminding all to ‘soak’ it up and continue on with life when the mishaps happen. I love that you mention such supportive family in the story.

I know exactly what u went through, but my problem was I didn’t know I had MS at the time so when I woke up to use the restroom my legs completely gave out on me and I had to use a towel and then have my brother lift me back onto my bed. After 2 weeks in the hospital they finally diagnosed me!

My heart goes out to you! MS has a way of creeping up on us whether at home, outiside the home or in the most unexpected ways and places. My husband and I have accepted that we never know what is coming around the corner. I learned 18 years ago I had MS, although that diagnosis has been debatable since I became so extremely ill in 2006, leading to my disability in 2008. This past October my colon (entire large intestines) had to be removed. Now living with a colestomy bag, I know there’s another “kick in the ass” coming. But I found my saving grace in writing poetry. I have 5 years of journals that were my therapy in rising above the MS drama. It was either going to tear me down, or build me up. You are a survivor like so many of us and I am sure we all could tell many stories that have embarrassing and horrific moments that would fill a huge library of boos on this topic. We are with you in heart, struggle and faith. Keep on writing because it is your therapy and ours. God Bless you!

Oh, my friend… you have way too much company, sharing in this condition.

The last time it happened to me, I was on the ground in the middle of the night (I had just fainted), I was struggling on the floor to do whatever it would take to get to the bathroom before “it” happened, and I thought…

God, you created the universe. You created everything. Everything. Your power knows no boundaries.

And… today, you go for a poop joke. That’s the best you can do? A poop joke?

I don’t like losing control of Those Functions. I certainly don’t like having to clean up after the loss of Those Functions, and I pray without ceasing that if it has to happen, it happens when I’m at home and alone.

But… the Universe does have a twisted sense of humor, does it not? Sometimes, you gotta just laugh along with it, as best you can.

Hi Nicole — thank you for sharing your most intimate life experiences with all of us. A number of my job seeking candidates have MS and this blog provides a window onto their lives that I would not have otherwise.

Adam,
Wow, I’ve never had a compliment quite like that. I feel honored. When do they tell you they have MS? Before or after you’ve hired them?
Your trying to connect with your employees. That’s commendable.

Thank you for your quick response! Big Tent Jobs is a placement agency so we match companies and candidates, but don’t directly hire them. Each job-seeker discloses his / her disability to me when we first talk. I emphasize how it is a STRENGTH and makes them more rather than less marketable– through qualities such as perseverence, patience, creativity and humor.

Have you ever done a blog on employment opportunities for people with MS? Do you offer guest blogs on your site? I know some great people with MS who may be interested in doing so. Also, would you consider doing a guest blog for us on employment? Check out our website at bigtentjobs.com and let us know what you think!

I can so relate also…. at least it was just urine. I have never had a UTI but I was a nurse so I know how extreme they can be…. I also have issues with bladder at the strangest of times…. I am mobile most times… other than when I have to use my cane. Waiting a second to long has cost me some embarassment also. I have also had bowel issue which was even worst and in the middle of WALMART. Had to ride home with my clothes and self a mess the car smelling horrible and trying not to talk to my children or my then spouse about it. I was having a flare and didnt know this was gonna be an added issue…..
Thanks for posting….. you are not alone and I appreciate your honest and brave blog

Nicole, I can so relate and am glad you posted this in your blog. Fortunately my accidents so far have all been at home but have made me late to work. The very first time I lost control of my bowels I called in sick that day. I had only been dxd. about a year and I was too freaked out to go to work and risk it happening again. As far as bladder issues, while I haven’t lost complete control (yet) I do have problems emptying my bladder. I can go to the bathroom, go into another room, sneeze or cough and have issues and have to change clothes. All I can say is, judging by the responses to your blog, you are certainly not alone!

I have your same issues. I’m investigating Botox injections and electrical implants with my urologist. Today I went with two friends out to lunch in a new restaurant that is all on one level. The food was great. Then when I asked where was the restroom, it was up 2 flights of stairs No way could I do that. So my friends zipped me home and I did make it in time, but I guess I’ll have to cross that place off my list. Too bad as they serve gluten-free food, too.
I have had many accidents so sympathize completely.

Oh Nicole – well done for being so brave and frank – I have had this problem on many occasions; bowels too a few times – it’s the one symptom i just can’t laugh off. CCSVI treatment sorted out my frequency issue, but still have urgency problems. Talking about this stuff is the only way forward, hard tho it is, I’m sure this will be a comfort to those who thought they were on their own with this horrible symptom… Much love x

hey girl, i started crying while reading your post, you write so well, i was right there with ya…but i had no towel either. we can all relate, some things are just embarassion, there i just invented a new word, embarrassed with passion. i really like you nicole and am so glad that you are around for me and lots of others and i want to be there for you too. love ya, leslie joan in damn snowy idaho.

I am glad you shared sweetie. I have had only one accident while out and I cried like a baby. Just being diagnosed with MS I was at the mall with my ex. Shopping away I felt I had to go but thought I could hold it. When I realized I could n,t it was to late. I had to explain to him what happened at first he laughed. He said when you had your hysterectomy I thought you were down with accidents. He walked behind me sat me on bench while he pulled up. I said I need plastic to sit on. The who ride i apologized and cried. He said, Kari I dealt with blood I can deal with your piss. He rain my bath water and washed my back and put on my p.j.s . and but me in bed where he crawled in. He layed me on his chest said real love dn,t care about accidents. I love you I just want you alive. He been with me ever since. So a accident brought us back together.

My Dear Beautiful Niece, you are not only the attributes you describe in your Bio, you’re also beautiful, smart and talented, sexy, interesting God Loving Black Women! I’m so proud to be apart of your life and I want everyone to know it! You have nothing to be ashamed for. You wear your CROWN very well!

Nicole, nicole, nicole. I soo understand. It is hard, cause we as women is stong and it hurts when we feel were not. I have lost my bladder many times in the morning trying to get myself out of bed.. I have humbled my self to wear depends when i go out. Ooooh it hurt so much the first time. Finding a correctly made handicapp bathroom is hard. So now i pull up my big girl pull ups, go to the mall, have whatever i want to drink and enjoy myself. Funny thing is my body wont go in them, and it waits till i vet home. Its crazy i know. I laugh at it now knowing i have a pamper on. I refuse to let this MS keep me inside. U take care lady.

THANK YOU for sharing!!! I have had many, many close calls… Sometimes I did ‘t make it. It is very embarrassing. Some family members just STARE!!! Like I CAN’T BELIEVE YOU JUST DID THAT!!! Thank you for being honest about MS….. ;o)

Oh I can empathize for sure. As someone who has experienced UTI’s most of my life, I totally get it. And now with the MS and TM, I often have “little accidents”. It can be humiliating, but it is nothing to be ashamed of. When the floodgates burst, there’s not much you can do to hold back the flow. Wearing incontinence products is the best way to avoid future embarrassment.

Unfortunately, I can totally relate. Not only have I lost total control of my bladder… on three occasions I have lost control of my bowels. It was so horrific. Once I was in a store with my daughter and one of her friends. It was so embarrassing, to say the least. I felt terrible for my daughter…that one of her friends may tell others what happened terrified me too. The second time I was with friends on a trip. Luckily they were understanding, but that didn’t help make the situation any less embarrassing. The third time I was with my husband and children. Luckily I am married to a wonderful man, who made sure my children didn’t know what happened, and did all he could to make sure I was cleaned up and consoled. MS is horrible. These things seem to hit me when least expected. I can’t predict them. We can just hope that we are surrounded with understanding,and caring people.

I have numerous UTIs. Terrible. It also affects my ability to do the normal things I do around this house. (Fatigue, ambulation etc.) My problem is… I am responsible for the UTI. I had terrible urinary retention. I literally could not get a drop of urine to flow. My bladder was over filled and it was impossible to fix the problem on my own. I went to the emergency room three times. (Different times, of course, as the retention occurred) I was in pain, in tears and I would have wet my pants in front of everyone had I been able. I eventually went to a urologist. He couldn’t find any reason for the retention other than being caused by the MS. He gave me home self-catheters. I only occasionally have the retention problem but it is wonderful to be able to fix it myself. I have sterile catheters, still wrapped, but it still causes issues for me. I have a UTI now and started antibiotics yesterday. I also have to go to the bathroom about 3 or 4 times in an hour. A struggle to get there in time. I wear a pad constantly- just in case. It’s a humiliating feeling but I guess we have to learn to deal with these things. I have every public bathroom in our area mapped out (in my mind) so my husband can pull over if necessary. I had to go to the bathroom 5 times from my home until we were leaving the doctors office. Such a hassle. I know you’re there with me and I’m sorry about that. Be strong. It is a chore but I can do it and so can you!

Nicole, I can relate. Not to the urinary infections, as my tests all come back normal for that. But having to go to the bathroom..like NOW!. Poise Pads are great btw.
The sense of urgency is sometimes more than I can manage. I am glad your sister in law was ok with everything! Thanks for your blog. I have been thoroughly enjoying it. My MS was diagnosed in Jan 2010, but the neuro feels I have had MS for more than 20 years and the symptoms were put down to other things.

I have had misses in stores both bowel and bladder. I wear a lot of black pants hoping to cover it up. I understand how you felt and am so glad that you were with family. I carry a bag in my car that has extra panties, poise pads and a pair of pants.

Although I do not have your problem of having a bladder infection which makes my MS worse, I have a wonderful friend that this happens too. And there are many times that it takes a week or so for her to remember that her in-ability to walk, fatigue, muddied brain (that’s what we call it), and frequent urnination is a sign of an infection. One of us will remember and then we are laughing and yelling “call the doctor”. Sure enough after a few days on the antibiotics she is feeling better.

I am glad you shared this with us. It will open the eyes to many who might not understand their weird symptoms. I know I am having a flare when I wet on myself several times a day. So I find my stresser and try to get rid of it. Good luck to you. “I might have MS but MS does not have me”

Been there, done that, although I will say not at a relatives house, just at home! Have you thought abt medication or seeing a urologist? I also found out I had a UTI (my 1st one) after getting Sodumedrol IV 2 1/2 months ago. I now have been on Doxazosin (abt 2 mons; before that it was Oxybutynin) which has helped greatly with my with urgency & night time frequency. I just know now that if I am going out I limit my fluid intake before hand. Give it some thought! what do you have to lose besides the depends?

I’m so sorry. I completely understand. My MS issues include bowel control. A few times a year I can’t make it to the bathroom. I’ve been lucky, so far, and been at home. My boyfriend moved in a few months ago and has gone thru 2 messes with me.

You have a challenging issue because you don’t get the usual symtoms of a UTI, neither do I. It is great that your family accepts your MS, better than you do. I would have gone into hiding from embarrassment. I have learned to do things that previously embarrassed me because they needed to be done (gyn exam-peed on md) or just occurred (thought I could make it, hah) . I am still in denial over the pads, hoping that whatever I pee non stop in the morning, will go away. Like I say: DENIAL. and laughing about it after. You need to keep up your level of activity-movement helps. Are there any MS specific exercise programs in your area, that you can get to? Pelvic floor exercise helps the bladder control issue and being in a class with only MSers is a plus! Sharing your thoughts with people who understand your situation is a great thing too. Yes, you can do exercises even when in a chair so don’t let that stop you. Talk to your neuro about a catheter, it will cut down on fatigue from jumping up to go pee, cuts down on your water bill too, hahaha. If you have more energy you can use it to move. Just a thought, ya know.

I can’t even blaim my biggest accident on a UTI. I had taken my kids out for a bike ride/walk. I walk the dogs, and they bike. I knew I was in trouble up at the school where I have used the forrest at least once before, but I thought I was still good for the walk home…and I almost was. I will probably never forget pissing myself in my driveway while trying to open the garage door. The kicker was my 4 year old daughter whom we were potty training at the time. She comes up, pats me on the back and says, “It’s OK daddy. We all make mistakes. Right? We just clean up and move on. You’ll do better next time.” I was proud of her empathy and ashamed at the same time.

It happened to me in the hallway of a very nice hotel when I couldn’t get back to my room fast enough. By some miracle, there was no one around, but the humiliation was complete nonetheless. Damned disease.

For the past few weeks I’ve been working on a new blog theme and even a new domain name for my blog. But I’ve always had a love/hate relationship with my own blog despite encouraging others to share. After getting my new blog up and running, the anxiety overtook me, and I removed the sites from the internet entirely.

But something wasn’t right, I had always said that people should blog and share, because it helps others not feel so alone. So things weren’t right without a blog either.

When I read this post, I realized I had to have a blog. If you were brave enough to share this, then I could figure out how to blog in a way that I can be happy with and share my own experiences with MS. So my new blog is back up with just one post, but I’m ready to start fresh and learn to blog in a way that makes me feel good about doing it and not feel so anxious.

Thank you for being brave and inspiring me to keep trying when I was ready to give up on blogging. Also thanks for being someone who would comment on my blog and let me know someone was listening.